As my presentation moved into the challenges of My Chronic Disease Secret, I asked a number of questions of the audience to try and start a conversation about what about this anonymous sharing platform works and what needed to be rethought. Does an anonymous sharing platform like this only benefit the diabetes community? If not, how might we better engage other disease communities? How might we improve upon the task of providing a platform free of judgement, shame, stigma, and identity to the larger chronic disease community?

The resulting feedback I received was exactly what I needed to hear.

Some don’t see what they are living with as a chronic disease, and may not identify with a site named “My Chronic Disease Secret.” Some haven’t accepted their diagnosis. Some don’t want to, or can’t relate to other disease communities. While there’s much we can learn from each other across diseases, these’s still something to being among your peers. “Me too” can only go so far – I think I stretched that philosophy too far with the initial approach I took to My Chronic Disease Secret. In applying the My Diabetes Secret formula so broadly, I didn’t respect the individual nuances of each patient community. It was wrong for me to think that I could reach everyone at once. This is a process, and it takes time.

The funny thing is, I’ve been having these doubts and criticisms circling in my head for weeks, if not months, but hearing these points from people who were brand new to this idea made all the difference. The people at this meetup only knew of My Diabetes Secret what I was able to convey in 20 minutes, their perspective was fresh. And ultimately, their feedback is part of the reason I’m writing this today.

Part of the reason My Diabetes Secret works is that it’s focused. Instead of trying to speak to everyone, it just reaches one community – people impacted by diabetes. And while my initial ideas about expanding the platform were similarly focused, I got distracted by the prospect of trying to help everyone at once and ended up satisfying none of my initial goals. With all of this in mind, I’m going back to my initial question that started this whole adventure:

I created My Chronic Disease Secret because I felt other online disease communities could benefit from a platform to share their feelings anonymously, free of judgement, shame, or stigma with each other. But I didn’t give these communities the respect they deserve in providing them with their own respective platforms as I had for the diabetes community. If diabetes has its own space, why not cancer? Why not arthritis? Why not mental health conditions? So…I’m going to do that.

This week, Britt Johnson joins me for a discussion about freelancing as a patient advocate, the difficult work/life balance of patient advocacy, and a look back on her 48-hour live tweeting effort of her #ChronicLife. Enjoy.

While the process was at times grueling, it was certainly rewarding. At the end of the last day each of the advisors wrote a word to represent what we meant to each other on a post-it note. The picture above is my collection of words. I was secretly hoping for ‘diet coke’ to be on all of them, but I appreciate the feedback I received.

I’ve never been part of something like this, where my input was so integral to everything that happened, and will happen. There’s a lot of work to be done before the conference next year, but I truly believe we’re on the right path.

For the next four days I’ll be participating in the 2014 Medicine X Advisory Board Retreat. Along with the other ePatient Advisors and Dr. Larry Chu, we’ll be discussing the 2014 conference and laying the groundwork for the 2015 happenings.

This week I’m joined by Colleen Young to discuss her keynote panel at Stanford Medicine X, her work as a health community manager, the origins of the weekly #hcsmca chats, and the care required to moderate a community about end-of-life, loss and grief. Enjoy.

Dr. Roni Zeiger joins me this week to chat about his life on the west coast, his experience as Google’s Chief Medical Strategist, delivering a TEDx talk, and his current venture – Smart Patients. Enjoy.

Julie Cerrone joins me this week to talk about things like avascular necrosis, psoriatic arthritis, complex regional pain syndrome, finding (and focusing on) positive thoughts when they are needed most, and how patient communities have made a significant difference in her life. We also sneak in some hockey trash talk, as one does. Enjoy.